المؤلفون: Piette, Y, Van den Bossche, F, Aerts, J, Aerts, N, Ajeganova, S, Badot, V, Berghen, N, Blockmans, D, Brusselle, G, Caeyers, N, De Decker, M, De Haes, P, De Cock, C, De Keyser, F, De Langhe, E, Delcroix, M, De Nutte, H, De Pauw, M, Depicker, A, De Sutter, A, De Sutter, J, Du Four, T, Frank, C, Goubau, J, Guiot, Julien, Gutermuth, J, Heeman, L, Houssiau, F, Hennes, I, Lenaerts, J, Lintermans, A, Loeys, B, Luyten, H, Maeyaert, B, Malfait, F, Moeyersoons, A, Mostmans, Y, Nijs, J, Poppe, B, Polfliet, K, Ruttens, D, Sabato, V, Schoeters, E, Slabbynck, H, Stuer, A, Tamirou, F, Thevissen, Kristof, Van Kersschaever, G, Vanneuville, B, Van Offel, J, Vanthuyne, M, Van Wabeke, J, Verbist, C, Vos, I, Westhovens, R, Wuyts, W, Yserbyt, J, Smith, V

المصدر: Acta Clinica Belgica, 79 (1), 26 - 33 (2024-02)

مصطلحات موضوعية: European reference networks, Flemish Network of rare diseases, patient pathways, rare connective tissue diseases, systemic sclerosis, Humans, Rare Diseases/complications, Rare Diseases/epidemiology, Rare Diseases/therapy, Scleroderma, Systemic/diagnosis, Scleroderma, Systemic/therapy, Connective Tissue Diseases/diagnosis, Connective Tissue Diseases/complications, Lung Diseases, Interstitial/diagnosis, Lung Diseases, Interstitial/therapy, Lung Diseases, Interstitial/complications, Scleroderma, Diffuse, General Medicine, Human health sciences, Cardiovascular & respiratory systems, Rheumatology, Sciences de la santé humaine, Systèmes cardiovasculaire & respiratoire, Rhumatologie

Relation: https://www.tandfonline.com/doi/pdf/10.1080/17843286.2023.2280737; urn:issn:1784-3286; urn:issn:2295-3337

URL الوصول: https://orbi.uliege.be/handle/2268/311069

المؤلفون: Thomas S. Tröster, Viktor von Wyl, Patrick E. Beeler, Holger Dressel

المصدر: BMC Medical Research Methodology, Vol 23, Iss 1, Pp 1-11 (2023)

مصطلحات موضوعية: Rare disease [MAJR], Rare diseases/epidemiology [MeSH Terms], Rare diseases/mortality [MeSH Terms], Rare diseases/statistics and numerical data [MeSH Terms], Medicine (General), R5-920

وصف الملف: electronic resource

Relation: https://doaj.org/toc/1471-2288

URL الوصول: https://doaj.org/article/37e3f2d6c6534b7da909eaf66271bb89

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المساهمون: Posada de la Paz, Manuel., Groft, Stephen C.

مصطلحات موضوعية: Rare Diseases -- epidemiology., Rare diseases -- Epidemiology., Epidemiology., Rare Diseases.

المؤلفون: Huayu, Zhang, Johan H, Thygesen, Ting, Shi, Georgios V, Gkoutos, Harry, Hemingway, Bruce, Guthrie, Honghan, Wu

المصدر: Zhang, H, Thygesen, J H, Shi, T, Gkoutos, G V, Hemingway, H, Guthrie, B & Wu, H 2022, ' Increased COVID-19 mortality rate in rare disease patients : a retrospective cohort study in participants of the Genomics England 100,000 Genomes project ', Orphanet journal of rare diseases, vol. 17, no. 1, 166 . https://doi.org/10.1186/s13023-022-02312-x

مصطلحات موضوعية: SARS-CoV-2, COVID-19, General Medicine, Genomics, COVID-19/genetics, Cohort Studies, Rare Diseases, Rare Diseases/epidemiology, England, Humans, Pharmacology (medical), Pandemics, Genetics (clinical), Retrospective Studies

وصف الملف: application/pdf

URL الوصول: https://explore.openaire.eu/search/publication?articleId=doi_dedup___::e6e48df5c237a396bfe360c6d2d3a3e0
https://pubmed.ncbi.nlm.nih.gov/35414031

المؤلفون: Bernadette Modell, Joy E Lawn, Matthew Darlison

المصدر: Journal of Community Genetics

مصطلحات موضوعية: 0301 basic medicine, Burden of disease, Congenital anomalies, medicine.medical_specialty, Disability, Epidemiology, business.industry, Congenital disorders, Public health, Public Health, Environmental and Occupational Health, 030105 genetics & heredity, Rare diseases epidemiology, 3. Good health, 03 medical and health sciences, 0302 clinical medicine, medicine, Original Article, 030212 general & internal medicine, Mortality, Intensive care medicine, business, Genetic disorders, Genetics (clinical)

وصف الملف: application/pdf

URL الوصول: https://explore.openaire.eu/search/publication?articleId=doi_dedup___::3a8f55ef9226276040a411d041f5f898
https://doi.org/10.1007/s12687-018-0382-4

المؤلفون: Masakazu Washio, Gen Kobashi

نوع المادة: eBook.

الموضوعات: Rare diseases--Epidemiology, Chronic diseases--Epidemiology

تصنيفات: MEDICAL / Public Health, MEDICAL / Epidemiology

المؤلفون: Manuel Posada de la Paz, Domenica Taruscio, Stephen C. Groft

نوع المادة: eBook.

الموضوعات: Rare diseases--Epidemiology

تصنيفات: MEDICAL / Preventive Medicine, MEDICAL / Epidemiology, MEDICAL / Genetics

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المؤلفون: Kay, Teresa Maria Taylor da Silva

المساهمون: Torgal, Jorge

مصطلحات موضوعية: Rare Diseases - epidemiology, Azores

URL الوصول: https://explore.openaire.eu/search/publication?articleId=od______1437::b357070b20cee639107cb842a582253a
https://hdl.handle.net/10362/15225